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Sammy | MECFS Advocacy

@m.e_and_more

7.5K

followers

578

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Education and #disabilityJustice with #severeME #MECFS #behcets and #complexChronicIllness. #millionsmissing #bedbound #autistic #queer #solarpunk

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#MECFS is #MyalgicEncephalomyelitis a severe and dehbilitating #neuroimmunologicalDisease that causes #PostExertionalMalaise #PEM aka #PostExertionalNeuroimmuneExhaustion #PENE and extreme chronic fatigue, as well as #dysautonomia, #cognitiveDysfunction (#brainFog), metabolic, cardiac, and immunological dysfunction.
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It is also an extremely misunderstood disease.
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#ME / #CFS is not:
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#Fibromyalgia
#Depression
#ChronicFatigue
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Although these may co-occur
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It is not caused by:
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Distorted thinking
Or
Deconditioning
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And the name "#ChronicFatigueSyndrome" is a terrible misrepresentation of a disease that causes
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-Neuroinflammation
-Extreme Muscle Weakness
-Metabolic Dysfunction & Poor ATP Production
-Low Blood Volume
-Immunologic Dysfunction In Relation To Excercise
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And more.
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#MyalgicE is a disease defined not by innability but by consequences.
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With over 50 symptoms, post exertional malaise is dehbilitating and can cause paralysis and leave patients bedbound.
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The exertion necessary to trigger PEM in #severeME and #verySevereME can be as little as a 5 min conversation or sitting up in bed.
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ME is so much more than being tired. At its worst it leaves patients bedbound, intollerant of light, noise, scent, foods & medications, in extreme pain, dependent on 24/7 care, feeding tubes, and IV fluids. Severe ME is #livingDeath.
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Even mild ME is a permenantly life altering disease that forces a 50% reduction in functioning and completely destroys capacity for aerobic excercise. Imagine being forced to give up half of every single activity in your life. Thats the minimum impact of ME.
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#LongCovid is not ME. But it is causing extensive #postViralIllness and as many as half of the 118 million #longHaulers could end up with MECFS.
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This illness is devestating and it is massive. If we do not #solveMECFS and #cureMECFS we are creating a massive humanitarian and sociological crisis. This is an emergency. It is long past time for everyone to know what MECFS is and isn't.
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#chronicIllness #millionsMissing #millionsMore #NEISVoid #disability

To contribute to MECFS education advocacy and research please follow and give as you are able to

@openmedf & @meactnet by @m.e_and_more

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4 years ago

Not all #LongCovid is #myalgicEncephalomyelitis.

While its super important to raise awareness of the simularities of the #millionsMissing with #MECFS and #millionsMore with #LongC it is also essential to recognize that only a subset of #covid #longhaulers meet the criteria for a diagnosis of ME.

ME aka #ChronicFatigueSydnrome is not the same as #chronicFatigue. The defining symptom of ME / #CFS is #PostExertionalMalaise or an exhasurabtion of metabolic, neurological and immune dysfunction symptoms 24-48 hours after exertion.

When you are talking about long covid patients who experience #PEM you should talk about MECFS because that is what these patients have.

When you are talking about long covid patients be clear that only the subset with PEM have MECFS.

It is important for patients with long covid to receive the correct diagnoses, because while there are no FDA approved treatments for ME, many commorbidities do have effective medication options. Management of ME must also be tailored based on a patients commorbidities.

Patients with MECFS and post viral fatigue syndrome must not be prescribed GET or CBT. This includes all long covid patients with PEM.

Long covid patients who experience PEM should be advised to #StopRestPace and informed about the importance of pacing agressively not just to prevent symptoms from fatigue but to prevent PEM in the following days. This is regardless of whether they have PVFS (less than 6 months post covid) or MECFS (more than 6 months)

Because long covid is a broad category that encompasses patients MECFS #MCAS #fibromyalgia #POTS #dysautonomia #autoimmune and #autoinflammatory diseases in many combinations the prognosis for long covid patients is much more variable than that of ME patients and recovery is more likely in early stages of ME, long covid patients who recover should not generalize their experience onto MECFS patients more broadly and should continue to support MECFS research.

MECFS patients have decades of experience with pacing, medical gaslighting, chronic illness, housebound and bedbound life and more. We hope that #covidLonghaulers will #LearnFromME and ally with us to end #postViralIlness by @m.e_and_more

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4 years ago

#ChronicFatigueSyndrome is a label that is ready to die. Here is why #CFS hurts everyone it labels and what we should be using instead.

In honor of hitting my first 1k followers I finally wanted to take on the topic of CFS. I generally use #MECFS in my posts and the reason for that is that I do not want to alienate or blame people with the CFS label. It is often the only diagnosis available to patients and this is even more true if you are female, POC or underresourced. I thank @katie_andm.e for her great post on CFS finally pushing me to adress this.

The truth is even if patients using CFS is not their fault, the term Chronic Fatigue Syndrome hurts so many people and needs to be stopped. Obviously people with #MyalgicEncephalomyelitis #ME are hurt when the pool of research on ME is littered with misdiagnosis. But so are all the people who are misdiagnosed. People with

#EDS
#Lupus
#RA
#Behcets
#MS
#Fibromyalgia
#Lyme
#ChronicEBV

#AutoimmuneDisease #AutoinflammatoryDisease #InfectiousDiseases and so many more #ChronicFatigue sufferers are hurt when we brush all of these conditions into the CFS wastebasket.

Finally for people with #severeME like myself the erasure of ME as a disease is a huge everyday hurdle to having the over 60 symptoms and extreme functional disability we suffer with recognized.

CFS started as a weapon against ME patients and it has been a successful one. Its about time we fight back. by @m.e_and_more

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5 years ago

Trigger Warning: ME kills by @m.e_and_more

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a month ago

This Blue Sunday, I am thinking of Sammy and all those with ME/CFS, especially those who are severe and very severe. Back in 2024 and 2023, when I was still able to help care for her, we got out the blue decorations, the blueberry waffles and pancakes. Food was one of the last things she could enjoy, besides her precious time with the online ME/CFS community.

I’m sharing a bit of her today with this blueberry white chocolate chip cookie recipe, developed by her home cook, Linda, for her low-histamine diet (due to MCAS). In the last year, Linda and I have been putting together a low-histamine cookbook in Sammy’s honor, since she often wished she were able to share these recipes with her community. The recipes will be free and available on Sammy’s website once the time comes (link in bio). The cookie recipe is there now, the rest to come later!

In her 2024 Blue Sunday post, Sammy wrote:

“Over 1 in 100 people suffer from Myalgic Encephalomyelitis, or #MECFS. 25% are housebound or bedbound with #severeME. 70% are unable to work.

So many people with ME are left alone. Despite being more disabling than most cancers, their disease is so stigmatised that they do not disclose it or do and are ostracised or simply told to get over it. Lack of disclosure leads to further stigma. It is why days like #BlueSunday are so important. To create accessible spaces for #pwME to interact with others. To bring visibility to ME / #CFS and #longCovid through a lighthearted day.”

This Blue Sunday is a great time to learn more (Sammy’s posts and website are a great resource) and to donate to ME/CFS research through Open Medical Foundation ( @openmedf ). A link to donate is in our profiles. A treatment or cure is the only hope for so many people with ME/CFS, and the only way it will happen is with more funding, support, and global attention.

There are also many people in the ME/CFS community doing incredible work for awareness, mutual aid, and advocacy. Two of those are Sammy’s friends as well, but there are many others that you should feel free to tag in the comments! @franhaddock_ @amelia.viviennesuying Low histamine blue berry white chocolate chip cookie picture by @m.e_and_more

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5 months ago

In welchem Stadium bist du? 💠 Inoffizielle ME Schweregrad-Skala von Sammy Lincroft aka @m.e_and_more.

Mit diesem Beitrag gedenken wir Sammy, die mit ihrem Instagram-Kanal sehr wertvolle, langjährige Aufklärungsarbeit geleistet hat. Sammy ist an den Folgen von sehr schwerer ME im August 2024 gestorben.

Schaut gern mal bei ihrem Kanal @m.e_and_more vorbei, wenn ihr Englisch versteht.

Euer Englisch ist nicht so gut? Das ist völlig in Ordnung. Falls ihr bei Sammy einen interessanten Beitrag findet, schickt ihn an uns! Vlt. können wir ihn übersetzen und zu einer der nächsten MEAH teilen :)

Aber jetzt sind wir erstmal auf eure Kommentare gespannt!

Euer @mecfs.space Team

#MEAwarenessHour - jeden Mittwoch auf Social Media Plattformen von 21 - 22 Uhr.

#MyaglischeEnzephalomyelitis #MEAwareness #MillionsMissingDeutschland taken in Berlin, Deutschland by @m.e_and_more

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9 months ago

Sammy loved to crochet and always created beautiful things for the people she loved. In her honor, close family and friends have been making blue flowers with the intention to share them with each other. Please share the things that Sammy created for you (if it feels right). by @m.e_and_more

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2 years ago

We are so disappointed that scammers are weaponizing her death and legacy to defraud people. Please stay vigilant and cautious. More details are incoming and will be posted exclusively from this Instagram. by @m.e_and_more

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2 years ago

Sammy passed away at only 25 years old on August 31st in Melbourne, Australia. She was so loved by her friends and family. While her suffering has ended, our commitment to her legacy and the ME/CFS community will go on. In honor of her life, we will be continuing her advocacy work and honoring her impact. Even though she was bed bound and trapped in a dark room for the final years of her life (Thanks ME/CFS), the scope of her influence was international.

We are so sorry for your loss. And want to hold space for everyone around the world who is grieving a remarkable person. Please join us at a virtual memorial and celebration of her life. More details are incoming. by @m.e_and_more

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2 years ago

Sammy has a high fever and is critically ill. Due to her ongoing struggle with MCAS we are very concerned this may be life threatening. She may not be responding to messages at this time, but if you could send your support and kindness for the road ahead of her, that would be greatly appreciated. I am a close friend that was given permission to post this on her behalf. by @m.e_and_more

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2 years ago

Check linktr.ee/sammylincroft to help Karen Gordon who is being denied lifesaving TPN. Will update with other very severe ME patients as the list of cases of medical neglect continues to evolve.

Preventable deaths from #Malnutrition in #SevereME #VerySevereME and #ExtremelySevereME should never happen. Yet they do.
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Most doctors know little about #MyalgicEncephalomyelitis and most will never see a #bedbound patient.
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It is essential to #selfAdvocate for proper nutrition. GPs caring for very severe patients, especially those with commorbidities like #MastCellActivationSyndrome #MCAS and #Gastroparesis must keep close tabs on the nutrition of vulnerable patients. A #dietician can help ensure proper nutritional input.
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While #FeedingTubes are the most visible way that nutrition is supported in severe ME patients, they are only the last resort. Steps like a liquid diet, spoon feeding and syringe feeding can all help patients get through difficult times. That said, it is important for doctors to be proactive about #TubeFeeding if a patient has no other way to get nutrition.
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Finally it is important to remember that caregiving access can be just as large a barrier to nutrition as ME itself. The majority of patients with severe ME struggle to or cannot prepare all their own meals. Diet is not a cure for ME, but being forced to eat foods that a person is intollerant or allergic to can severely damage their health and chances of recovery.
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#DietaryRestrictions are expensive to accomodate. Especially those like a #LowHistamine diet or one that avoids #FoodAdditives which many #MECFS patients are sensitive too.
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The challenges of preparing, consuming, and digesting food mean that many patients may avoid eating much at all to avoid worsening symptoms. While many doctors are quick to assume that this is #anorexia the reason for this behavior is not a fear of food or weight gain but simply to protect health.
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#FoodIsAHumanRight and people with ME and #complexChronicIllness deserve nourishment.
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#Tubie #MedicalNeglect #MillionsMissing #LongCovid #MastCells #MillionsMore #Food #MyalgicE #NEISVoid
⠀ by @m.e_and_more

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2 years ago

Severe M.E. has taken so much from me, but I am sharing some #BedForSevereME photos hope that we can gain the support, care, and understanding we desperately need. #PjsAndProtocol

I normally talk about #MyalgicEncephalomyelitis
In abstract. Talking about my own life and suffering is so much harder.

Hard to know how my friend and family feel powerless and heartbroken when I explaon that my #chronicMigraine #neuropathicPain #jointPain flu lile symptoms, #sensorySensitivities and more leave me in constant #chronicPain.

That I never feel rested and that my every word and movement is as though it is struggling to break through quicksand.

That my energetic and enthusiastic conversations or hyper focused advocacy work are fueled not by any new energy but by #adrenalineSurges that leave me in utter misery and paralysis afterwards. Yet these exertions are the only time I feel for a little bit close to normal.

#severeME now close to or perhaps already #verySevereME has taken so much from me. It is slowly taking my last outlet of advocacy. When it does it will finally have killed me.

I am lucky. Lucky that I can survive this illness for far longer than most as I can access private healthcare, home nursing and more. But I have seen where this train ends and I reject the end of the line.

Every day I feel pain, frustration, and anger at this horrific disease. Yet every day I feel gratitude and relief st the things I have left. Eating my own (specially prepared low histamine) food. Holding my husband close. Talking to my dad and friend.

Life is a gift. Severe ME takes that gift away logarithmically increasing death until it is so close and yet still not close enough for relief.

This #livimgDeath is a slow and stifling one. Like treading water white weights are slowly added to your ankles. Slipping beneath the waves again and again always struggling for that one last breath.

I want to catch my breath. I want to remember what it feels like to float effortlessly in the water. Or lie basking on a beach. But I cannot. You fight or you drown.

Severe ME advocacy often feels like shouting into a void only you cannot shout you can barely whisper.

Please hear us. by @m.e_and_more

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2 years ago